Trust Me

A couple of weeks ago I asked my PCM for a referral to OB/GYN to replace the IUD that I had to surrender over the summer. She and The Guy and I have been talking for some time about the options and realities of having another child with my condition, and the answer we came up with is that we will wait for a little longer and see if I am still doing well with my current regimen.

Usually these things take weeks to schedule, but they called the next day, and I had my referral appointment on the second day. No matter what your history in the OB/GYN clinics you have to have counseling in order to get birth control through the MTF (all the ones in which I have been treated anyway), and the idea is that you get to talk to your OB/GYN about all of your birth control options, what you want from your birth control, take his or her advice, and decide on what is best for you. That is the theory, anyhow.

Some people (like me) have an idea ahead of time what they want or what is best for them. I, for example, due to my medical history and ongoing condition, am not able to use a hormonal birth control. Because of that I know that the copper IUD (ParaGuard) is the best option for me. Also because of this, I often read up on ParaGuard and IUD use in women, and try to keep abreast of any information regarding IUD usage, risks involved, etc. The IUD has such a bad reputation from so much misinformation that I feel the need to stay on top of this. Some would say this makes me a big smarty-pants-know-it-all. I say that sometimes a woman can’t trust that her doctor is going to take her word at face falue, and in the off chance that her doctor isn’t as awesome as mine she needs to be prepared. I am privileged to have information available at my fingertips.

I did not realize that my appointment would not be with my usual kick-ass OB/GYN, Dr. K, the same one who saved my fallopian tubes and life this summer and who promised to give me a shiny new IUD whenever I was ready for it. Not panicking when I saw the face of a woman I didn’t know I sat down as she introduced herself as Nurse Midwife V and told me that she had been looking over my file. Great. Maybe she was doing her background reading too, because I really tire of bringing every doctor up to speed constantly on my condition when it is right there on the computer screen for them to see. I don’t have a bunch of degrees and I can keep up with the required reading.

Before I had even the chance to say anything she told me that I was “not a candidate for an IUD” because of my ectopic pregnancy, and that she was not going to refer me for one. When I started to say that I understood that there were some risks she cut me off and told me that my pap was also past due and kept talking. I tried to assert myself past her obsession with people rooting around in my vagina, to let her know that I was aware that there were risks involved with the IUD, but that I knew that not only was what happened to me rare, but that I knew it was rare that it might happen again. But she wasn’t having any of that. She kept right on talking like I wasn’t even there.

I told her that my regular doctor had already said I was fine to have one. She responded by saying that it usually took weeks to get in to see him, as if this was supposed to deter me somehow. I also tried asking if the new ACOG regulations had been implemented yet, thinking this might distract her and get me closer to my goal (also, I am in the lag area none of them know what to do with, being 29, soon to be 30) and all she would say was that my pap was past due. Is it? I don’t know. I had a normal one in late 2008. I am in a mutually monogamous relationship…

When I left I told the front desk that I would no longer allow Nurse Midwife V to treat me. I am currently in the process of filing a formal complaint against her. What shouldn’t have happened here was having everyone from the desk staff to the NCOIC (that’s Non-commissioned officer in charge) tell me how nice Nurse Midwife V is and how everyone likes her so much, and that she is well known for being very good at what she does. That might well be true, great. My experience is that she was condescending and rude, and didn’t help me with my medical needs to my satisfaction. I think that people forget that sometimes, that doctors and nurses are also here to provide a service for us. I have a medical need, and she didn’t meet it. I shouldn’t have to settle for that. No matter how nice and great she is to work with. I also shouldn’t have my experience erased and dismissed by everyone in place to help me when things go wrong for me. That is not good patient advocacy.

I am rather privileged, however, in that I was able to make another appointment, and I saw Dr. K the next day. Had I been someone who had to drive a long way to a clinic, I might not have been able to. Had I had to pay out of pocket for this visit, or if my insurance limited the amount of OB/GYN visits or birth control counselings I was allowed per year, I would not have been able to. Had the travel cost me money I did not have, this would not have been possible. Had I not had the type of job I do where I set my own hours, I might have had to miss work. These are the kinds of things that women face when they come up against providers like Nurse Midwife V, providers who don’t want to listen to women, who won’t talk to women about their own bodies and medical histories. Providers who don’t trust women to be actively involved in their medical processes. Providers who can’t be bothered to involved women in the partnership that should be their own medical care, especially when it comes to their reproductive health. As it was, having to go back a second time was already taxing on my spoons, and stressful, because now I have be on my game. Suddenly I have to come in educated on something that my provider should have known the first time.

Thanks to meloukhia’s indominatable Google-fu I took in the information I was looking for, backing up what I had already said, that an ectopic pregnancy did not preclude me from having an IUD (or, that a previous ectopic pregnancy was not a contraindication for an IUD). Dr. K was impressed that I was so prepared. He told me that he had heard that information, but he himself had been so busy that he hadn’t had time to read any of the journals for himself. He told The Guy (who went with me this time, because they like to banter back and forth in Korean) that I should come in from time to time to keep him updated on current women’s health, and said he wished more people came to him so informed. He said that whomever told me that I couldn’t have an IUD was wrong. I was prepared, but I shouldn’t have had to come in as if I was fighting a war.

Two weeks later I have my IUD.

Nurse Midwife V didn’t care to ask why, after having one IUD failure (as rare as they are, b/c they are pretty much the most effective form of reversible birth control out there, with a fail rate of less than one percent), I would want another IUD. She didn’t bother to find out anything else in my medical history that might affect my decision to make that very personal choice about birth control, like that I am on medication that might have contraindications with hormonal birth control, or that previous specialists had determined that hormonal birth control is a migraine trigger for me. She simply asserted her own opinion (as wrong as it turned out to be) and called it a day. But all of that information is in my medical record if she cared to look. The same record she said she reviewed when she made her initial judgment.

About Ouyang Dan

is an extremely proggy-liberal, formerly single mommy, Native American, invisibly disabled, U.S. Navy Veteran, social justice activist and aspiring freelance writer currently living in South Korea on Uncle Sam's dime. She has a super human tolerance for caffeine and chocolate and believes she should use those powers for good. She said should.
She is not a concise person, and sometimes comes on a little aggressively in comments. Sometimes her right arm still twitches when military brass walks past her, but she would rather be reading YA Lit or pwning n00bs.
She can be found being cliche about music, overthinking pop culture, and grumbling about whatever else suits her fancy at her personal website, random babble.... She also writes about military issues for Change.org's Women's Rights blog.
If you have something interesting to say email her at ouyangdan [at] disabledfeminists [dot] com. Lawyers in Italy looking to hold lottery winnings in her bank account may wait longer for reply.
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19 thoughts on “Trust Me”

This is a TERRIFYING STORY. I can’t believe that this happened to you, ESPECIALLY not from another woman. I’ve experienced and come to expect this kind of treatment from male gynecologists (in most cases, never having had a period or a uterine cramp seriously diminishes the ability to empathize and assist someone who is suffering from them, although I’m glad to hear Dr. Kim is not like that), but to hear this from a female practitioner who presumably went into this profession to HELP women is unconscionable. I’m so glad to hear that you filed a complaint against her. I hope it’s taken seriously.

The frightening thing is that, although this seems to be a problem most frequently with OB/GYNs and issues relating to women’s health, it’s not limited to us. It’s terrifying to think that the vast majority of people know little to nothing about their own health care and simply trust to their doctors to give them “THE ANSWER.” People need to come in as well informed as possible, armed with every possible question to ask their doctors. They should never be made to feel bad for asking or being “worried about nothing;” it’s the health care provider’s JOB to find the best solution for EACH, INDIVIDUAL PATIENT, which includes keeping them calm, being polite to them, and TREATING THEM LIKE A PERSON in addition to simply keeping them alive. Shame on Nurse Practitioner V.

This is all very reminiscent of 19th Century novelist Frances Burney’s mastectomy in 1811, performed by “Seven Men in Black” without anaesthesia. A partial account can be found here: http://scribalterror.blogs.com/scribal_terror/2005/05/frances_burney_.html but is NOT for the faint of heart. When one of the seven men asked of his colleagues (while Burney was hidden under sheets, fully conscious and totally silent), “Who will hold this breast?” Burney sat up and replied, “I will!” and proceeded to explain in excruciating detail the exact extent of her pain and problems. Even then, the men didn’t listen to her wishes OR her needs. You’d think we’d have come a little further in 200 years.

Sorry for the long rant. Y’know, I’m just going to go make this my own blog post. Do you mind if I link to yours?

Boo for the system that makes it hard to follow up on a mental promise to yourself to get a new one. I may have told a certain doctor who may or may not have an Ego who may or may not manage my pain that I hated him. To his face. Very scary until I had the prescriptions in my hand, because I loathe his smug face (probably some projection on my part) but he’s the only one I can see.

Tricare (say that word to anyone connected to Western medicine and an “oh” comes out) doesn’t cover pain management because well, it’s Tricare. So if there are pain management specialists in town willing to take on my case (pain in my “female” area!), I’d need a different insurance or lots of money to see them.

I’m glad you’ve got quick turn around on your referrals! I adore the referral person at my PCM, before Tricare made me come in to see my PCM (a nice guy) every time and made us stop er, backdating referrals because someone forgot what appointment number she was at… Anyways, a lot of nonsense this month referral-wise. Dr Ego (a specialist) referred me to PT. Tricare said nope, your PCM has to refer you. And then 2 referrals went out, one to a completely different place. No one knew why, but they had the official PCM and insurance paperwork. Of course, so did the correct place.

I went in to my appointment yesterday planning to ask Dr Ego lots of questions. I ended up shouting and swearing at him. (damn) Whether it was intended as such, the appointment was an exercise in sadistic mind-fuckery. He spent the whole time telling me he wouldn’t do what “you want” re: pain and pain pills, because I’ve found a working combo that he didn’t prescribe and then he told me to talk to my mom about finding another doctor! And left the room. He came back in and stood there so calm and so… gah. And handed me a scrip for my mood stabilizers. And the requested pain medication. I asked my mom, “What just happened here?”

My mom, however, is pure evil, I discovered that day. Guess who doesn’t *need* referrals because she’s so special?

My insurance and my doctor are in the same place in my life – I cannot function without them, but god, I hate them.

TRICARE most certainly *does* cover pain management, both for AD and dependents. I was in a pain management program as an AD (for all the good it did me, learning how to sit a certain way and not clench my teeth was not really what I needed, and not going to replace my need for pharmaceuticals), and I know several spouses and children of AD memebers here who are in the PM clinics and see specialists (I was told there wasn’t one either, but I had such a bad experience in my last program that I left well enough alone, and my PCM takes care of my needs, thank Ceiling Cat), and it is all covered by TRICARE. Whomever told you that is a liar. What may be going on is that you possibly do not have a PM clinic where you are, or they would need to refer you off post for one (?), but I don’t know your personal situation or where you live. My suggestion is to go over the head of whomever told you that you can not go to a PM program. There is always someone more important that who you are talking to, and if you don’t get the answer you need, try going to the Patient Advocate at your MTF. That is what they are for.

I’ve been having all kinds of problems in this area lately. I spent several months trying to convince a doctor that the pain I was having wasn’t due to anxiety. I’ve had anxiety problems for years and while I think it’s possible anxiety made something I had going on much much worse, I don’t think that’s my sole problem because I have a pretty good idea what anxiety does to me. It doesn’t stick around for a year and cause muscle tension for a year while I’m on antidepressants.

I went to another clinic, and during the first visit with one of the doctors I saw, he spent time gushing about the antidepressant I was taking, which annoyed me because I personally don’t want to be on antidepressants for very long. That just rubbed me the wrong way because he was clear in telling me that he wouldn’t prescribe things like pain relievers or muscle relaxants, so it just felt wrong that he wouldn’t take my preferences into consideration, but really, that was just the tip of the iceberg. The next time I went up there, I needed him to refill a prescription I was taking, and he gave me that line about how he wouldn’t prescribe things because I thought I needed them and then proceeded to lecture me because I didn’t know the exact dosage of a medication I was taking. The kicker is he failed to listen to my explanation for why that was: I was only taking half a pill. He tried to prescribe just a two weeks’ supply because it could interact with something else I was taking and wanted to follow up, but since I only take half a pill, that was three weeks’ worth. He failed to listen to a few other things I said and corrected him multiple times. And, you know, I was the one he figured deserved a lecture. He also seemed generally disinterested in actually helping me and took more of a “wait and see” attitude which was not a great idea since I’d been in pain for about a year. I refused to see him again.

The guy I’m seeing now seems OK. He actually noted I was taking half a pill on the medication directions and considering that not even the doctor I first discussed that with wound up doing that. It also turned out that there’s not much of a risk for drug interactions since I’m taking a low dosage, which is what I figured. I’d been on the same combination of pills for about a year at that point. Something might crop up later, but so far so good.

I saw a psychiatrist who insisted all autistic people take anti-psychotics and changed my medication pretty much every time I visited. After Abilify gave me akathisia, I flat out didn’t want to try anything along those lines again. He wouldn’t take no for answer and prescribed something else. The strange part is that he seemed genuinely shocked when I exhibited withdrawal symptoms after he took me off Paxil. I refused to see him again mostly because he was prescribing this crap without even getting to know me. I later decided I’d had it with antidepressants, but at the time, they seemed helpful and all I’d asked him to do was keep prescribing the stuff I was already taking instead of pushing different medications based on his own flawed views. Some autistic people have really violent reactions to anti-psychotics, so his view was pretty dangerous.

Quijotesca: This is a situation I know too well, and has forced me into parts of what amandaw calls the Second Shift for the Sick. I had to get into the habit of either hauling in all of my prescription bottles or making a list of everything I was taking and how/how much. Such a pain, but it saved me from having to go through what you described (not that I am trying to ‘splain anything to you, it’s just how I personally handled that problem). Plus, when a doctor saw me pull a huge ziplock from my bag or a meticulous list, their attitude changed slightly.

Something else I always make clear to doctor I am seeing for the first time is that I am not going to change meds just because they say so. I won’t swallow something they give me without doing my own research, because I have had a doctor almost kill me b/c zie didn’t pay attention to the computer screen w/ my record on it. This happened twice, once w/ an injection and once w/ pills. The first time the pharmacist came running down the hall yelling as the doctor was about to inject me with something I am allergic to for a migraine, because zie didn’t believe me that I had them chronically and thought I was just malingering.

The second time neither the doc nor the pharmacist caught the drug list, and I was on way too many narcotics and other meds at once. We won’t talk about what happened then. Long story short (too late!) I pick up the script, look it up, and either dump it in the toilet or decide to go ahead with it. Fortunately I am privileged, like I said in the OP, that if the doctor won’t continue w/ my treatment (if it is working fine) I can find another doctor, even though it is a pain in my arse.

I went to another clinic, and during the first visit with one of the doctors I saw, he spent time gushing about the antidepressant I was taking, which annoyed me because I personally don’t want to be on antidepressants for very long.

OMCC! Were you my active duty twin? This was how they insisted on managing my chronic pain for three years. I am going to write a post about this. This course of treatment works for some people, but when it isn’t helping someone, it should not be insisted upon. OY!

We shouldn’t have to do this much work, but sometimes we do. I don’t want to risk replaying some things that have happened.

@ Danya, unfortunately, being a woman does not a good gyn make. I’ve gotten blown off by both gynecologists who were male and female. But I still found better care under a male specialist. It’s like he knew he didn’t know what I was going through so he had to overcompensate. And who knew a guy doctor would be willing to prescribe boric acid (and knew why I was interested in it) but the lady gyn refused? Go figure.

I can’t stand my current gyn’s nurse… She’s way too rush rush. Even the gyn herself, she’s rush rush too and I tell that office when I call, schedule my appointment for whatever time you’re less likely to be swamped, because I need extra time. So I go in knowing what I want to talk about & I have a lot of questions… Which seems to frustrate the hell out of her.

And I can’t switch doctors easily because not enough in the area know about what I have. I’m getting tired of explaining it over & over again to doctors.

@ K “And I can’t switch doctors easily because not enough in the area know about what I have. I’m getting tired of explaining it over & over again to doctors.”

Bingo!

Which was why Dr Ego’s little stunt was so … grraugh. It’s hard to start over. For a doctor, he don’t know much. 😛

And even with all the records (a few pounds from each doctor), a new doctor will want to start anew, I fear, which is more time spent twiddling my fingers and screaming in pain.

@Ouyang Dan – I called my case manager (I think she was supposed to stop working with me when I was 18 or 20 or something, but she mostly just tells me what I can do and helps Tricare speed up) today, and there are pain specialists in the area, so it’s something to think about. My PCM won’t have a problem with referring me to one, he’s such a nice guy. However, this week has been a bit much, I’m quite tired. So it’s something to shelve until spring break or next week or whatever. I just started PT and want to get that settled – settled as in not seeing him 3x a week! He’s Dr Ego Jr and much nicer than his father, but today’s session left me worse than when I came in (for no reason I can understand, as usual)! But PMs seem to focus on nerves, and I’ve been down that road (Lyrica’s side effects are fun – not being able to read, having the floor drop out from under you – and that just what I noticed and remembered!) so I’m not getting my hopes up. But it’ll be a new direction, and well, I do hate Dr Ego. (Not the first time I’ve shouted at him while crying.)

I’ve had to explain every single time why I take my birth control the way that I do. I’m on the pill, but taken so that I never have a period. And every single time, it devolves into the explanation that having a period is hazardous when you have Ehlers-Danlos Syndrome, because it makes hypermobile joints even MORE flexible, which is serious bad news. I wonder how many times that is written in my file. I know I’ve had to tell at least a dozen doctors, and most of the time it results in a conversation where I have to convince a skeptical doctor that I know my rare genetic disorder that they usually don’t even remember learning about in med school better than they do.

I wish I could get an IUD. I can’t have the hormonal type because straight up progesterone makes my bipolar and anxiety disablingly bad all the time (instead of being highly inconvenient and occasionally disabling). They don’t want to give me one because there’s that low risk of perforations, and the risk goes quite a bit higher when you have a connective tissue disorder like EDS. And add to that the fact that just having a pap done is excruciating, well, I’m not sure I’d survive having an IUD put in. At the very least, I’d end up dislocating several fingers due to clenching my hands into fists. (Pain problem not in the least made worse by the fact that local anesthetics work at something like 25% normal on me, oh no.)

…which reminds me of the time they wanted to do a urological study – I can’t remember the proper name for it – where they insert a catheter and fill your bladder up by varying amounts and test what happens. The catheter is coated in lidocaine, the main local anesthetic we have. The pain was so excruciating that I couldn’t relax at all, so they couldn’t get anything resembling accurate reads on the test and the whole damn painful study turned up exactly nothing. I was so pissed off, because if they had made some alternate arrangement for local anesthesia (like injecting with lidocaine so I got a hell of a lot more), we might have actually gotten something useful. Instead, I have a bladder disorder they don’t really understand and can’t do anything effective about because I haven’t responded well to the medications they’ve tried on me. Small wonder that I stopped going to the urologist’s office and just invested in a lot of pads, eh?

I don’t understand the obsession American medical care seems to have with keeping women from having IUDs. I had a nurse prac — at a clinic that the awesome nurse prac at Planned Parenthood assured me offered Mirenas (my coveted BC method of choice) to nulliparous women — tell me there was zero chance they would give me an IUD unless I popped out a kid, because it “might hurt [my] womb.” Uh, what? Why would it be guaranteed to hurt me? Why does a slightly increased risk of expulsion mean I can’t get the method I want?

I came in informed, I tried to express what I wanted, and instead I got shuttled into the bathroom to pee for… I don’t even know what, a pregnancy test? Either way, I couldn’t produce. Then I got shuttled into a room, waited forever, and the nurse prac just… bulldozed me. She wouldn’t even let me say that I was aware of the risks and comfortable with them – she literally just talked over me. I have facial pain that makes talking difficult; a surefire way of making me incredibly upset is to speak over me.

She kept pushing me to try the Nuva Ring, even though my paperwork clearly stated that I had migraine with aura. I couldn’t even get a word in edgewise to point out that estrogen is a no-go because of that, since I’d rather not increase my risk for a stroke or blood clot, thanks. Then she pushed Implanon, ignoring that I have heavy periods and nasty cramps. It was so incredibly frustrating, since my face hurt and I kept having difficulty speaking, and they wouldn’t let my husband go back with me. The only bright side was that when I noted I’d had a pelvic done the day before at PP (literally), the clinic’s nurse prac didn’t try to examine me.

I ended up on a progesterone-only pill, which I’m okay with, but jeez. Why do medical personnel not listen? Now I’ve got to call around and hunt for a facility to give me what I want, what I can safely have. I’m lucky that my insurance permits that, but it sucks spoons that I don’t have.

Kaitly: *big gentle hug* Oh, the books I feel I could write on Lyrica side effects, if only I could get through the side effects to concentrate long enough! LOL!

I had a PT guy tell me once he was going to fix my uneven hips. He grabbed one of my legs while I was on the table, and w/o telling me what he was doing, yanked so hard he pulled me right off the table. He was seriously trying to pull them even, which you can’t do b/c my lower spine is slightly uneven. I cried so hard. I haven’t agreed to PT since.

Thank you for all of the sharing. I can not stress enough to anyone with the energy to do so: be as informed as you can on your medical care. When going to a new doctor know as much as you can about your condition and your medications. You have a right to be heard. You know your body better than anyone, no matter how many degrees and fancy frames are hanging on their walls.

I haven’t had to explain the BC issue – I’m on Depo right now, and I think it’s messing with some chemistry – zits on my chest, oily hair – but no breakthrough! (I was on Lupron – hot flashes at 18. In summer. In Nebraska. In my aunt’s old farmhouse without central air. I slept on the vent one night, desperate. After Lupron, pills pills pills. At first with a placebo week, but then without. But the breakthrough got too bad.)

So I haven’t had a “normal” period or cycle since June 2006. At my PCM, they ask every time when doing height/weight/bp, and it’s the same answer every time!

I’ve been lucky in that I haven’t had to explain other doctor’s decisions that often. Two moments come to mind – I’ve had kidney stones (fun on a bun!) and I take 1000 mgs of Calcium a day, since I don’t make it anymore because… ask my endo! Anywho, it was “fun” (if painful, because GIVE ME DRUGS THERE IS A ROCK IN MY BODY) to see the look on the ER intake nurse’s face as she processed it. “You’ve had kidney stones and you take how much calcium?”

The other – I went to the school clinic because I thought I had the flu and needed some tamiflu. Well, they need to know your medical history and all meds you’re currently taking. I forget what pain med I was on at the time (that was during the great time when the patches worked and I had little breakthrough pain. Unfortunately, I stayed on them for a year or so after they stopped working), but the nurse was like, “You do know this is addictive, right?” No, I know nothing about the medications I’m taking!

I think it’s important to listen to your body (and ignore it when your body wants to sleep and your brain knows you have a test today) and know what medications are doing, but it’s also important to communicate with your doctors, either through an advocate or just practice. Writing a letter to Dr Ego… well that wasn’t a good example, but practice can help – they have “authority” in our eyes.

Oddly enough, I had a short discussion with some girl in the school food court today about BC – she had to take some melting medication, and her companion was like why, and she mentioned BC so we got to talking. It sucks that we can’t know what will work with minimal harm right off the bat, but finding the right one is aces.

@Ouyang Dan – ouch! My PT was picked by Dr Ego (his son is the one doing the torture) but they are night and day in patient interactions.

I’ve only seen him 3 times, and he’s been very receptive to me, especially yesterday’s horrible pain (tenge (sp?) unit, heating pad, and book for the last part of therapy… ahhh). He has done the leg yank thing, but he’s been very upfront – this is what I’m going to do, tell me at any time, we don’t want to overdo it. And no falling off!

Ouyang Dan – Yeah, I think treatment is especially common when it comes to pain issues, which is hardly a good thing. I just don’t see why antidepressants are seen as more desirable than other medications. They create an actual dependency, unlike medications where an addiction is simply a possibility. I can’t stand antidepressants for long because they screw with my ability to concentrate. (A rare side effect. I’m so lucky!) I can, but not as deeply as I want to. I don’t have a “real job” right now, so I’ve been trying to focus on writing, but it’s really hard. I’m not gonna put it on hold for much longer than I have to.

I went along with taking antidepressants again (not Paxil. Not doing that again) since I was pretty stressed to the point that I just couldn’t get things done. I didn’t really blame myself, but turning things down a few notches until things stabilized a bit seemed OK as long as I was in control of it. I really wasn’t thinking it would affect my pain any, so I’m kind of sick of the assumption that it’s going to take care of everything. I’m also doing some exercises, but that hasn’t quite taken care of it, so it’s back to trying to talk to doctors.

I’m glad I’ve finally learned to put my foot down, but I really wish it wasn’t so difficult. It’s hard to tell when I’m dealing with someone who can be reasoned with or someone who’s just not going to budge. At this point, I’m trying to avoid a situation where I fight someone for months and don’t get much done. Well, that and I’d prefer someone who isn’t going to talk down to me or suddenly snap at me. That’s not really unreasonable at all and it sucks that I have to deal with that sort of thing.

“Kaitly: *big gentle hug* Oh, the books I feel I could write on Lyrica side effects, if only I could get through the side effects to concentrate long enough! LOL!”

Oh, God, THIS. THIS. I swear I have what looks like ADHD thanks to Lyrica; I just can’t concentrate, and I can’t remember words (and I used to be the Goddess of Vocabulary) and if I couldn’t use Google as my external brain, I couldn’t remember quotations any more.

I WANT MY BRAIN BACK SO MUCH. But Lyrica is the only thing* that’s done anything to make a dent in my chronic intractible migraines.

* Well, there’s one other prescription drug. But I don’t feel safe specifying it. How sick is that, that I have to be cautious about admitting which *entirely legal* *prescribed by my doctor* medications I take?

It saddens me that in 2010 there are still too many health care practitioners who don’t “get” that a big part of their job is to LISTEN to the patients. No matter how many spoons it takes me, I make every effort humanly possible to go into every health care appointment (doctor, dentist, physical therapist, whatever, etc.) as informed as possible… for my own protection.

While it may take many spoons to do the research and preparation heading into each appointment, I have found that my time and efforts are (usually) rewarded. I say “usually” because I have most certainly run across the “Nurse Midwife V” type over the years and obviously it is INCREDIBLY frustrating to head into an appointment very prepared only to be ignored or talked over. 🙁 🙁 🙁

Also, I have a HUGE problem with going into an appointment only to find I am seeing a stranger that I had no plans to see! That really ticks me off. If the doctor I had a scheduled appointment with (made months in advance) is unavailable, the office should call to inform me of this fact in advance! I should not be scuttled from one practitioner to another within a practice at random just because it’s convenient for that practice.

If I am commuting to see the specialist my PCP referred me to, that is exactly who I expect to see. (This happened once when my endocrinologist’s office randomly assigned me to a nurse practitioner for follow-up on thyroid nodules for which I had gotten a fine needle biopsy). I have since insisted on being seen by my endocrinologist. I also told them I didn’t appreciate them switching me to someone else without notifying me in any way until I arrived to check in.

When I take the time and effort to be prepared and informed, I expect to be treated with respect and listened to by my health care practitioners. When I get dismissed or talked over, I get furious.

I have been known to file complaint reports about doctors. Like the time I was 24 years old and single (and not at all ready to be a parent) and a doctor who was looking at my medical history during pre-admission testing for a surgery to treat my endometriosis told me to “get pregnant” as a prescription to “cure” my endometriosis. THERE IS NO CURE FOR ENDOMETRIOSIS!! (By the way, Happy Endometriosis Awareness Month. Feel free to sign my endometriosis awareness petition linked on my blog. We’re targeting mainstream media to get endometriosis FACTS in the media and counter misinformation). 😉

Sorry, I digress. So, I filed a report against the above doctor for prescribing pregnancy as a “cure” for my endometriosis. The pregnancy cure is an endometriosis myth. Even if pregnancy were a cure for endometriosis (which it is NOT!), that stranger doctor had no way of knowing if I’d be in the significant number of endometriosis patients who is infertile. What he said was so wrong and on so many levels.

Anyway, any practitioner unwilling to deal with the very real issue of hormones affecting migraines is just plain ridiculous. I won’t even get started on that because this comment is getting pretty long. (Sorry. Gynecology issues can get me really fired up).

I am lived with chronic illnesses for 28 of my 41 years. Endometriosis was the first chronic illness to affect me. I now have many other conditions as well. I have learned that I HAVE TO advocate for myself (and/or take someone with me on occasion to appointments/procedures/surgeries) because I can’t afford not to.

It makes me sad that people like Nurse Midwife V just refuse to LISTEN to the patient. The patient knows his/her body best!

Finally, Kaitlyn… I can empathize with you on the kidney stones. I have had 11 stones and they are not fun. I’m sorry for your pain.

When I am unsatisfied with the care I receive, I either report the problem, switch doctors (if that’s an option), or both. I refuse to be dismissed or ignored. I know my body and if someone won’t listen to me, I get very upset.

It saddens me when patients’ concerns or thoughts are dismissed. I’m sorry to hear about the story with Nurse Midwife V. Sadly, such incidents are too common.

Patients truly do have to advocate for themselves. Doctors with 10 fancy looking diplomas on their wall can sometimes be arrogant and egotistical. Doctors who are highly recommended by others can do/say outrageous things to other patients.

Patients shouldn’t have to spend so much energy to be heard… but it is important for patients to stand firm and demand that their healthcare practitioners listen. It is sad that there are sometimes no other options in a particular geographical area to switch doctors. I drive out of my way to see the specialists who listen to me and treat me with respect. It takes more spoons to commute… There is no doubt about it. For me, it’s worth the effort to drive further and see doctors who “get it”.

Thanks for posting a great example of the anguish caused by a health care practitioner who doesn’t LISTEN to the patient.